I’m just wondering if there’s anyone on this forum who has taken the decision not to go through Stem cell transplant and has lived to tell the tale? Can anyone tell me what their experience of coping with Myeloma has been after making this decision? If you’re out there, did you regret the choice you made? How did the disease progress, how quickly did any deterioration happen, how did you deal with that? I’m in the twilight zone having been diagnosed over 18 months ago. I initially signed up for a trial culminating in Stem cell transplant, went through the induction programme, had Stem cells harvested but decided not to go through with the Stem cell transplant as my levels were so low. It kind of felt like using a sledgehammer to crack a nut…. It still does. My paraproteins are riding slowly but steadily but still aren’t at the level they were at diagnosis. I’m suffering with rib pain and MRI shows legions and possible fractures in two places. The pain is annoying but not particularly debilitating and dealt with by paracetamol. My energy levels are usually fine. I exercise, I walk, I’m a yogi, I garden, I travel in my camper. I’ve thoroughly enjoyed my life and made the best of my time since refusing Stem cell transplant. Now my consultant is recommending going for Stem cell transplant in light of the progression. Again I’m struggling with that recommendation as I’m feeling well and enjoying life. The only time I’ve felt terrible is when I was on the preparation Chemo regime leading up to Stem cell harvest. So many posts here tell of dreadful suffering during Stem cell transplant recovery and a much diminished quality of life and health afterwards… and no guarantee of staying clear for any elongated length of time… and no promises of a better prognosis regarding relapse. What happens if I just decide to carry on as I am and enjoy my life as it is? Also can anyone tell me a positive story? Have you had not just elongated but good quality of life post Stem cell transplant. Thank you for reading and hopefully responding. I’m struggling to voice this with my family as we just end up in tears 
Hi @MightyMo welcome to our forum and posting.
You have worded your dilemma and thoughts so well.
Firstly personally, I am certainly not a medical person, it is everyone’s own choice what decision to make.
Perhaps the best person to discuss this with is your clinical nurse, if you have one, consultant or GP as they know you and your whole medical history.
Perhaps talking to family will be a really difficult conversation, but it is your decision.
I hope others will be able to share their experiences on here, but as we are all unique individuals we all differ.
I will give you the Blood Cancer UK support line on 0808 2080 888
Please do use us as a soundboard as well.
Take lots of special care of yourself and please do keep posting.
Thanks for your response Erica 
Dear @MightyMo,
Gosh, this is a lot for you to process, thank you for coming here, writing things down can often feel such a relief. I hope someone with some lived experience will be able to give you some insight. I am so glad to see you have been living your life alongside your myeloma, doing all the things you enjoy is so important.
I agree with Erica that everyone will have different opinions on this and it is so important that you make a decision for you. I think it would be really helpful for you to talk through with your consultant or clinical nurse specialist to come up with some pro’s and con’s for each treatment path.
Would it help if you talked through your worries with one of our team, you would be very welcome to call us and we can talk through your concerns? 0808 2080 888.
Do get in touch if you would like to.
Best Wishes, Heidi J (Support Services Nurse)
Hi there
A stem cell transplant is just another treatment
There are many others that sail through transplants and come out the other side and continue a new myeloma life. We rarely hear about those success transplants because those people are getting on with life.
I had my first transplant as it was the best option for me at the time to get some sort of remission
Chemo before hand was hard and I was in hospital for most of it and I went into my first transplant with 3 weeks in hospital.
It takes time to recover our immune system is basically destroyed and our new cells put in to rebuild it. I said I would never ever have another transplant
I got 5 years from my first transplant and relapsed
I didn’t hesitate to go for a second but I wanted to go through chemo with a good quality of life which I got from DVD
I’m 2 years into my second with 4 weekly maintenance dara and I’m aware this one may not last as long as my first
I think your doing amazing living with myeloma and all the things your doing because life is for living the best way you can
Make treatment choices for you
No one can say what happens if you carry on as you are myeloma is so individual to the person.
There are always options and you must do what feels right for you.
My second transplant has given me a very good partial response as my numbers will never be zero
Remission means that the myeloma is sleeping and at some point it will wake up (becomes refractory to treatment) myeloma is clever it works out how to circumnavigate chemo over time hence relapse remit.
Hope that helps
That really does help. Thank you for taking the time to respond so succinctly and honestly. It is such a hard step to take when I am feeling and living well. It seems like sabotage and a betrayal of my body’s efforts to heal itself… but I am becoming aware that it may be a step I need to take. Straightforward, sound information such as yours helps tremendously. Sending you strength and wishes for a long remission
Thank you Heidi, I have an appointment with my Consultant and Myeloma Nurse On 22nd July. It had to be postponed as my dad had a stroke whilst I was visiting him in Spain 
I’m just trying to get my head around things a bit before that appointment as it is to discuss further treatment. My doctor has already said that Stem cell transplant should be our next step. Although I totally understand that she is trying to give me the best medical/pharmaceutical advise, I just don’t trust the process and am terrified of taking a wrecking ball to my immune system and damaging my heart and kidneys. It seems barbaric to me 
I’m sure in the future the healers will look back with incredulity that we could possibly have thought this treatment was the answer. However, it’s all the current medical profession has to offer as a way of staying around longer… and my life is full, with so much more to do and so many people I want to spend longer with. I watched my Mother die from complications caused by the chemotherapy she was receiving for Myeloma. It wasn’t the cancer that took her; it was a blood clot on her lung caused by the medication regime. I am unfortunately very well aware that the side effects can become the biggest killers. This makes the decision even harder.
Could I possibly ask you what your quality of life has been post Stem cell transplant?
I can see your experiences are what’s making you question transplants.
Your dealing with dad and yourself and mum
Could you ask your consultant for a referral to a counsellor so you can talk your fears through?
Myeloma itself is an immune suppressor and doing its damage like a wrecking ball.
I suspect the reason you have been put forward for a transplant is to give you the best possible outcome after a short period of remission
What treatment did you have and do you have high risk myeloma?
How long ago was mum diagnosed?
You will be given a good overhaul before going into transplant
Your heart will be looked at and your kidney and lung function
DVTD seems to be a regime others are doing well on
Don’t give up as there are treatments coming along and Car T cell therapy and Trials
I believe it’s the complications that come with myeloma that eventually causes death
Yes course you can 
After my first transplant it took me a while to get to my new normal of living with my myeloma.
I went into it not very well I took time off work while having chemo.
I was aware my immunity was growing like a new born baby so I was very cautious out and about
I returned to work phased return around 6months post transplant.
I was having physio at my local hospice to gain my muscle and strength back.
I have to say covid was a god send for me
I took part in keep fit on line through a local cancer charity and yoga, mediation, coffee and cake chat, seated ballet and I was fitter than I had been previously and my anxiety was under control.and I lost nearly 2 stone
When I relapsed I was in a stronger position health wise going into transplant and found it easier than first time around.
It took me around 4 months post transplant to regain my strength
I’m still shielding and it works for me I’m still doing my keep fit and yoga
Through all the treatment I have had and being immunocompromised at diagnosis I’m now permanently immunosupressed and happy to stay away from people
Well I suppose it’s up to you and it’s something I’ve been debating as I have the advanced stage of rare T Cell Lymphoma called Mycosis Fungoides(the other blood cancer MF!)and they seem fair certain that I will expire from T Cell Lymphoma if nothing stronger is done as virtually everything else has failed.Sometime in July they’ll begin the procedure which itself carries a risk to life but nowhere near as significant as T Cell Lymphoma.
Hi there, sorry I’ve had company so a late reply. Thank you for your time. Mum passed in 2020 after a few months of chemotherapy treatment for her Myeloma. I haven’t told My Dad about my diagnosis and won’t unless I really have to. He lives in Spain and has done for 25 years. It would be very hard for him if he thought I would have to suffer the same fate as Mum. Bless him.
You’ve been through a lot and I hope you continue to feel well. I’m so grateful for your time and patience. It’s so difficult to move forward when I have such valid concerns but I really appreciate all the practical advice and encouragement. Thank you so very much for sharing your journey and for your information and honesty.
Thank you for sharing. You are going through a lot. I pray all goes well for you and that you recover to have some good quality life ahead of you. Sending strength and hope.